Seanad Éireann díospóireacht -
Wednesday, 4 Dec 2019

Vol. 268 No. 12

International Day of Persons with Disabilities: Statements

Minister of State at the Department of Health (Deputy Finian McGrath)

I thank Members for the opportunity to speak this afternoon about disability. It is important that we have these debates to keep the disability issue live in mainstream politics. I am particularly pleased to have this opportunity in the context of the International Day of Persons with Disabilities, which was marked yesterday. This is a UN sanctioned day, which is celebrated internationally on 3 December each year. This year's theme is "Promoting the participation of persons with disabilities and their leadership". The theme encourages us to work together to ensure that the barriers to full equality and participation for people with disabilities will become a thing of the past. It focuses on the empowerment of persons with disabilities and recognises disability as a cross-cutting issue. I will speak about the work that is under way across government to support these overarching principles and objectives.

The national disability inclusion strategy, NDIS, is the major framework for policy and action to address the needs of people with disabilities. It contains 114 measurable and time-specific actions that relate to eight key themes, including education, employment, health and well-being and transport. Its overarching objective is to improve the lives of people with disabilities in a practical sense and to create the best opportunities for people with disabilities to fulfil their potential. When I launched the strategy in July 2017, it was never my intention that it would be set in stone for the duration. The strategy is a living document and must be capable of responding to emerging priorities and developments. That is why it contained a commitment to a mid-term review. The aim is to ensure that the strategy remains relevant for the rest of its lifetime.

It is always a priority for me to hear the views of people with lived experience and their families and from disability organisations. It is important, therefore, that the review be informed by a consultation process.

We had two events last month aimed at getting the views of all the stakeholders. The first was held in Dublin on 13 November 2019 and focused on hearing perspectives of disability organisations, and I attended that myself as Minister of State. The second event was held on 26 November 2019 in Tullamore and was oriented towards people with disabilities and their families. The next step is the publication of the consultation report and the development of a refreshed set of actions for consideration by the steering group.

As we look forward to renewed strategy, it is important that we acknowledge the achievements that have been realised since the launch in 2017. These achievements include: the ratification of the UNCRPD, something which was an absolute priority for me and which I was delighted to work on and to help to get over the line; work to facilitate the commencement of the Assisted Decision-Making (Capacity) Act 2015, including the codes of practice and the establishment of the decision support service, I will be returning to this later in the debate; publication of the Make Work Pay report, with 24 practical recommendations, many of which have already been implemented; introduction of new ballot papers for referendum to facilitate private voting; introduction of the AIM supports for children accessing the ECCE; the report of the task force on personalised budgets; the development of the three-year plan under the comprehensive employment strategy, which I will be talking about shortly; finalisation of the report on the review of career guidance in schools; and the preparations for the commencement of the Irish Sign Language legislation.

While acknowledging these achievements, we also know, and I know, there is more work to do. I accept that argument. My vision for what I want to have happen is quite simple. When the strategy concludes in 2021, my aim is for Ireland to be a better place for people with disabilities to live in, a place that does not tolerate discrimination or exclusion. It should be a place where people with disabilities are involved and consulted with on matters and decisions that affect their lives. It should be a country where people with disabilities can enjoy full equality, participate fully in our society and enjoy a quality of life on a par with the rest of the population. It should also be a country where the focus is not on what people cannot do, but on what they can do, in other words we focus on the person's ability rather than disability. This is an ambitious vision, but I am confident that the NDIS is capable of triggering real change focused on targeted and specific outcomes. I look forward to bringing the renewed strategy to Government in January for approval, but I stress also that the strategy success will depend on the shared engagement with all of the stakeholders in building a fairer society. I look forward to taking an active part with everyone and taking this work forward.

Before I conclude, I wanted to return to the area of employment for people with disabilities. While progress has been made, the rate of unemployment among people with disabilities still remains too high. According to the results of the census of 2016, there were 130,000 persons with disabilities at work, which represents 6.5% of all people at work, or 22.3% of the total disabled working population of 584,045 people. People with disabilities are still only half as likely to be in employment as others of working age, so this is a serious issue for me. That people with disabilities want to work is evidenced from the Department of Employment Affairs and Social Protection 2015 survey of disability allowance recipients. It showed that of those people who are not currently working, 35% expressed an interest in working part time while 8% expressed an interest in working in full-time employment. The Government is committed, and I am committed, to addressing this issue through the implementation of actions under the comprehensive employment strategy for people with disabilities from 2015 to 2024. I have spoken in this House previously about the strategy, and that is a good opportunity to let the House know that in common with the NDIS, the CES is also going through a period of renewal. The second phase of the strategy was launched yesterday in the form of a new three-year action plan. The plan includes a range of actions to advance the six strategic priorities and provide the focus for the work on the implementation group for the next period in the lifetime of the strategy. The aim is to consolidate progress made in the last number of years and to start to deliver real results.

One of the areas that has been identified for particular focus is the next phase of the CES in strategic priority 6, "Engaging Employers". This is why one of the key initiatives in the new action plan is a planned multi-faceted awareness campaign to promote awareness among employers and other stakeholders of the opportunities represented by employees with disabilities. This programme will include capacity building for employers and positive action measures to support the recruitment and retention of people with disabilities in employment. I have to say some employers have shown great examples of good practice regarding this particular issue.

The key issue in relation to the disability inclusion strategy and the employment strategy is setting worthwhile targets and ensuring Departments and agencies work together to deliver on them. That is not about money or extra money, but of course money is important too. It is also changing mindsets of all of us, both those with a disability and without. The mindset has to change in the broader society. When one sees somebody with a disability, one sees beyond the wheelchair or the cane. One sees the person and all that he or she can bring to one's workforce. Equally, for those with a disability, do not label oneself or allow oneself to be labelled. A person's disability is but a part of him or her. It must never define him or her. The Government, through the HSE, is committed to protecting frontline services for people with disabilities with targeted improvement and identified priority areas. The national service plan in 2019 provides for a significant level of funding of €1.9 billion to deliver essential frontline services for people with disabilities.

These core services span a spectrum of essential interventions, ranging from the clinical therapeutic support to the rehabilitative and training and day services, homecare support, as well as respite and residential provision. All funded service providers, including non-clinical service delivery focused organisations, are required to deliver safe and effective services within a defined budget allocation. The HSE must also ensure that it prioritises available resources on the basis of meeting the health and social needs of all people with disabilities. Our current policy promotes a non-condition specific approach to disability service provision based on the needs of the individual rather than on the provision of services based on a specific disability diagnosis. A Programme for a Partnership Government commits this Government to improving services and increasing supports for people with disabilities. Significant resources have been invested by the health sector in services for people with disabilities over the past number of years. In terms of health spending, substantive expenditure has been agreed in recent budgets to support increased provision for people with disabilities and their families. I am pleased that we have been able both to build upon significant existing resources and to obtain additional funding for disability services in the budget 2020. We are in the middle of this process at the moment with the HSE service plan. With these additional moneys secured, the overall budget for disability and services in 2020 is in excess of €2 billion. That is right: €2 billion. The increased level of funding in 2020 will enable us to continue to provide residential support to over 8,600 people with disabilities at more than 1,240 locations.

Upon taking office, one of my priorities was to ensure that all young adults leaving school or rehabilitative training would have access to supports and services which meet their needs at one of the most critical transition points of their lives. Additional funding of €13 million will provide supports and day services to approximately 1,600 young people with disabilities who leave school and training programmes next year. I recognise the critical importance of respite for loved ones and families of those with a disability. I am pleased to confirm that an additional €5 million will be provided in 2020 to build on the capacity of our respite services so that we can respond to the changing needs of service users and their families. Specifically, this funding will provide intensive support packaged for children and young people in response to the changing needs of service users and their families. This initiative will include intensive in-home visiting support, planned overnight, specialist behavioural support and extended day weekend and day-based activities for families.

Sláintecare is centred around providing services and support at the lowest level of complexity. An additional €5 million in this budget is provided for the emergency protocol to support people with disabilities who have high support needs.

This includes funding for emergency placements and the provision of intensive home support and respite packages, which are intended to delay the need for residential care for vulnerable users. Finally, an additional €2 million will be provided in 2020 to support the implementation of the autism plan, which includes a range of measures to improve services for people with autism and their families.

I thank the Acting Chairman for facilitating the debate and look forward to the contributions of Senators.

Acting Chairman (Senator John O'Mahony)

As there are no Members from Fianna Fáil or the Independent Group present, I invite Senator Conway to speak.

Senator Martin Conway

I will give way to Senator Devine if she would like to begin. The usual protocol, Acting Chairman, is that an Opposition Member goes first.

Acting Chairman (Senator John O'Mahony)

That is fine.

Senator Máire Devine

We are the real Opposition. Members of the other Opposition are absent, which is not unusual. I thank Senator Conway for giving way, which is decent of him.

Deputy Finian McGrath

It is very democratic and inclusive here.

Senator Máire Devine

I welcome the Minister of State back to the House. Any criticisms I make relate to issues which I am very concerned to see resolved, and that can only happen through genuine dialogue and commitment to achieving full equality for citizens living with a disability. There are 643,000 such people in this country as well as 200,000 unpaid carers.

Two weeks ago, when the Minister of State was present for statements on disability services, we asked that he intervene to allow for time to work out a solution to prevent the closure of the Cuisle centre in County Roscommon. I realise there are issues involving the Irish Wheelchair Association, IWA, but the Minister of State was asked in this House, the other House and by protestors outside Leinster House to intercede. Even a six-month or 12-month delay would allow time to work out the difficulties and that would mean a great a deal to those affected. I welcome his increased budget for next year but it is a pity he cannot borrow from it to secure the continued operation of the Cuisle facility. The protestors stressed how unique their situation is, which is based on the particular offering Cuisle provides to its users. They told the Minister of State how no hotel could possibly provide the facilities and, most important, the privacy and independence available to families at Cuisle. There was a major show of support for the centre in County Roscommon, which should have left no one in any doubt how vital this service is. I ask the Minister of State to ensure this matter remains on the agenda and is not forgotten.

I wish to highlight the progress that has been made by the Oireachtas disability group, which brings together politicians of all parties and five major disability advocacy groups. Its job is to provide a vital link between the needs of persons with a disability and the services that are delivered. I commend the work of Senator John Dolan and my colleague, Deputy John Brady, in this regard.

In March last year, 20 years after Ireland signed the UNCRPD, the Government finally ratified the convention. This was an important and welcome decision, albeit many years late. Sinn Féin stressed at the time that ratification was only a first step and that the real measure of delivery in respect of the rights contained in the convention would be in its implementation. Sadly, the Government did not ratify the optional protocol to the convention, as it had promised. We have consistently pressured the Government since March last year to do so and to progress delivery of the hope and promise of the convention as speedily as possible. However, the process has been slow. For example, almost two years after legal effect was given to the official recognition of Irish Sign Language, we still have not seen the required resourcing for its full and anticipated promotion and development.

We need to see rights made real For this to happen, provision and resourcing must go hand in hand with the announcements that are made to great fanfare by the Government. Sinn Féin is acutely aware of this requirement, as reflected in the provision in our alternative budget for 2020 for 1.5 million personal assistant hours. The Minister of State and his Government have the power to make rights real for people with disabilities. I urge him to step up to the plate and champion the cause. He has little time left to make his mark.

Implementation of the Assisted Decision-Making (Capacity) Act 2015 is at a standstill. Funding is needed for its full implementation, and the measures it contains require speedy advancement. On International Day of Persons with Disabilities, I urge the Government to make this work a priority in early 2020 and to make good on the promises it has so far failed to keep. One of the bodies involved in the Oireachtas disability group is Independent Living Movement Ireland. The ability to control and organise one's life independently is essential to restoring dignity to those living with a disability. Yesterday, a report by Inclusion Ireland stated that more than 2,000 people with intellectual disabilities are still living in institutional settings, despite Government policy that all such facilities were to close by the end of 2018. The housing adaptation grants administered by local authorities are gone as soon as they are announced because the waiting list is so long. I have spoken here previously about the 18 year old man I met in St. James's Hospital three years ago. He went in not feeling great and was given an awful diagnosis of a degenerative disease, which saw him swiftly progress to a lack of mobility and having to use a wheelchair. His only option, because the grants were not available either for people in private homes or in social housing, was to go into a nursing home. He has been there for two years, surrounded by much older patients, and his situation is dire. Other young people are ending up in the same situation, where a nursing home is the only facility available. The local authority adaptation grants scheme must be given additional funding. We need to view this from a rights perspective in that these are citizens whose rights are being denied.

On International Day of Persons with Disabilities, I extend my best wishes to those living with disability in Ireland and their family members. There are 643,000 people with disabilities in the State and 200,000 unpaid carers. I also extend good wishes to the wider advocacy sector, which works hard on behalf of all who depend on it.

Senator Lynn Ruane

I welcome the Minister of State to the House and thank the Leader for his assistance in facilitating the request from Senator Dolan and myself to mark International Day of Persons with Disabilities in the Seanad. Senator Dolan asked me to convey his apologies for being unable to attend the debate. We have worked closely together on this issue and I remind colleagues of the important legislation he has presented to the House. Will the Minister of State indicate whether he has made any progress in considering those proposals before we proceed to Committee Stage?

This is a day to celebrate people with disabilities. However, in doing so, we must also reflect on the many barriers society places to their well-being and active participation. It is a source of significant disappointment that despite clear communication by the disability community of its requirements, budget 2020 did not deliver any of the shared ambitions expressed. The statistics illustrate starkly that the recession continues for people with disabilities. Some 24% of adults with a disability live in consistent poverty, compared with 11% in 2011. Disabled people in Ireland are four times less likely to be employed than those without a disability. Just 31% of working-age people with a disability are at work, compared with 71% of the general population. People with disabilities who are capable of living independent lives are trapped in their homes, residential homes or nursing homes due to a lack of personal assistance services and home supports. More than 1,400 are living in nursing homes, many of whom could live independently with the right supports. In other cases, parents are providing unsustainable support into their 70s, 80s and beyond. In a small recent sample of just 18 organisations, 183 people were reported to be living with a carer aged over 80.

There is an unprecedented crisis in disability services, with many struggling to maintain existing service levels. The sector is struggling with a €40 million shortfall in funding due to austerity cuts that have not been reversed, the additional costs of compliance and regulation, an ageing infrastructure, and general inflationary cost increases as the economy continues to grow without an equivalent increase in State funding for the services provided.

In addition, there is a growing level of unmet need, which calls into question the value the State places on services and, more important, how it prioritises the rights of people who need such services. Insufficient money is being spent to support people to live independently in their community. Only 0.3% of people with disabilities receive a personal assistance service under the HSE service plan. As far back as 1996, it was identified that an average of ten hours of personal assistance per person per week could only respond to essential personal care needs and not quality of life requirements. Certainly, it would not enable full participation in the community. There is no current legal right to personal assistance in Ireland. However, on 19 November, a motion on the right to a personal assistant unanimously passed in the Dáil. We can build on it in 2020.

There remain significant obstacles and barriers in everyday life for people with a disability. Daily, people struggle to access vital healthcare, housing, education and supports. Figures show that one in four people with a disability lives in consistent poverty.

Many of the issues I have raised are not in line with the UNCRPD, which Ireland ratified in 2018. It is important that the State provides leadership and takes measures to address these issues, whether through budgetary measures, legislative reforms, the implementation of proactive policy initiatives and programmes or all of the foregoing. The important role played by Ireland internationally in supporting disability rights should be noted, as should the importance of campaigns such as the "Put us in the Picture" campaign run by Sightsavers Ireland. These have led to disability rights being a central focus of Ireland's overseas aid contribution and coincided with the refresh of Government's international development policy, A Better World. It is vital that this approach be maintained, given that 80% of the estimated 1 billion people with disabilities throughout the world live in low or middle income countries. We should be proud of the State's foreign policy in this area.

Among the main areas that need to be addressed to meet our obligations under the UNCRPD and the NDIS is that people with disabilities have an equal right to live in the community with choices equal to others, as outlined in Article 19 of the convention. The State must take effective and appropriate measures to facilitate this right and the full inclusion and participation of people with disabilities in their community. The public sector equality and human rights duty imposes a statutory obligation on public bodies to have regard to the need to eliminate discrimination, promote equality of opportunity and treatment, and protect human rights. Furthermore, Article 5 of the UNCRPD requires states parties to take appropriate steps to ensure reasonable accommodation is provided to promote equality and eliminate discrimination. As per Article 9 of the UNCRPD, states parties to the convention to ensure that people with disabilities have access on an equal basis with others to the physical environment, transportation, information and communications, including information and communication technologies and systems, and other facilities and services open or provided to the public in urban and rural communities.

The articles of the UNCRPD are interconnected; to realise one, the others must also be realised. As Departments respond to the obligations placed on them by the convention, they need to develop a cross-departmental focus. Although one Department may need to take the lead on delivering an action, collaboration from the outset on planning the service will be required for it to be effective. Cross-departmental collaboration will be required to fully implement the principles of the UNCRPD and bring them to fruition.

The theme of this important day is the promotion of the participation of persons with disabilities and the development of their leadership, acting on the 2030 development agenda. It calls for the empowerment of persons with disabilities regarding the decisions that affect them, which is key in the Irish context. I was, therefore, concerned to learn yesterday that the National Platform of Self Advocates will close in January due to a lack of funding. It is exactly the sort of organisation we need to align with the theme of this International Day of Persons with Disabilities. What actions can be taken to support such groups in the future?

What progress has been made towards ratifying the optional protocol to the UNCRPD, which allows for individuals to lodge complaints against Ireland with the UN? It is needed to give teeth to this conversation. What is the status of the only disability legislation brought forward by the Government, namely, the Disability (Miscellaneous Provisions) Bill 2016? It has been before the Dáil for three years but has progressed no further than Committee Stage. On a day such as today, we need to reflect on the progress we have achieved for people with disabilities over the past year. I ask the Minister of State to update the House on my queries on the Government's plan to further address issues affecting people with disabilities.

Senator Martin Conway

Tá fáilte roimh an Aire Stáit go dtí an Teach. It is always a pleasure to have him in the House. His address referred to the interesting theme of this International Day of Persons with Disabilities, which is the participation of people with disabilities in leadership. I have always adopted a positive disposition. I believe in looking at the glass as half full. As a Senator with a disability, I like to think that having people with disabilities in politics pays testament to the theme of the International Day of Persons with Disabilities.

We have made significant progress in the past two decades as a result of many organisations lobbying, working hard, collaborating and developing and delivering policies. When I went to school in integrated education in County Clare, there were no SNAs or resource teachers. A visiting teacher who specialised in vision impairment came to the school for an afternoon once a year. The required supports did not exist then, but they do now. There are more than 10,000 SNAs, and rightly so, because it allows people to reach their potential at an early age. By and large, they do a good job. The system should be structured slightly differently in certain cases. As a young person gains in confidence and develops his or her abilities and skills base, he or she may not necessarily need as many hours of support from an SNA or resource teacher. In such a circumstance, the support provided should be reduced because doing so will allow the young person to develop his or her independence. Our goal is for people with disabilities to be independent. Interventions and the usage of SNAs and resource teachers need to be constantly monitored. Just because a young person receives ten or 15 hours of support for the first five or six years of his or her educational cycle does not mean it is needed for the final phase of the cycle. The structures within education need to be constantly calibrated and considered because the first leg in equipping people to be independent is through educating them and allowing them to develop their skills base, whether in the world of academia, apprenticeships or elsewhere.

I am regularly contacted by people with disabilities who wish to discuss their experiences and what they wish to achieve, and who seek suggestions and advice and so on. I try to give them and their parents support because those of us who have been successful in our careers have a duty to reach out to others, provide reassurance and make the pathway easier for them. I refer to how the political system has responded to the quest for equality to which every citizen rightly aspires. When I started in politics in 2004, the notion of a Minister of State with specific responsibility for disability issues sitting at the Cabinet table was often discussed, but it was an aspirational goal. There have been very good Ministers of State with specific responsibility for disability since I was elected to the Oireachtas in 2011.

I remember the work Kathleen Lynch tried to do at a time when we were very challenged economically and the country was broke in many ways.

To be fair to the Minister of State, Deputy Finian McGrath, and his group of Independents, they made it a priority to have a Minister of State with responsibility for disabilities sitting at the Cabinet table. He met a Fine Gael Party that had evolved into believing in that position in no small way because of the constant highlighting at parliamentary party level and with party leadership of the necessity for this to happen.

In 2016 two willing participants joined and we got a Minister of State with specific responsibility for disability at the Cabinet table with an interdepartmental brief to stress-test every decision made at Cabinet from a disability perspective. Things get done by being at Cabinet, the epicentre of where decisions are made. We are very fortunate to have the Minister of State, Deputy Finian McGrath, who has personal experience of how disability affects people's lives. He has been there for more than three years and knows that opportunities can be denied if it is not properly structured.

A further step in the political cycle and a coming of age came when Deputy Varadkar became Taoiseach. I had had many discussions with him over 20 years, prior to his becoming Taoiseach. He and I both became local authority members on the same day and were involved in Young Fine Gael prior to that. We have had countless discussions on how to break down the barriers to equality, and what practical structures can be put in place to allow people to achieve their potential. In his first speech as leader of Fine Gael, on the eve of becoming Taoiseach, he spoke extensively about disability in the Mansion House. He spoke about the need to ratify the UN Convention on the Rights of Persons with Disabilities, not in an aspirational timeline but in a very tight timeline. Working with the Minister of State, Deputy Finian McGrath, that happened by the end of 2017.

There have been incremental positive steps, reflecting not just our international responsibilities, but also our moral and ethical responsibilities. That by no means suggests the job is done - far from it. Too many people with disabilities, who have benefited from a good education, remain unemployed. I know there are strategies seeking to address that. While progress is being made, it is painstakingly slow. The first cog in giving people independence is giving them a job, which gives them a way to contribute to society and earn a living from contributing to society. That breaks down more barriers than one could ever imagine. The next time the Minister of State comes to the Chamber to speak on disabilities, I would like him to specialise on the area of employment and how we might work together. He was here two weeks ago to respond on my Private Members' motion on the need for eye clinical liaison officers in our hospital groups. I am very confident that as a result of that motion we will see eye clinical liaison officers in our hospitals. That is another cog in equipping people for independence.

We need to remember that our population is ageing, meaning that an increasing number of people will have disabilities. This is good government, proper government and what should happen. I sincerely hope it will become a natural form of government to have a Minister of State with responsibility for disabilities at the Cabinet table.

Senator Jennifer Murnane O'Connor

Yesterday was International Day of Persons with Disabilities and today we recognise those living with disability. This is the 28th year that the world has observed the International Day of Persons with Disabilities. This year's theme focuses on the empowerment of persons with disability for inclusive and sustainable development. The United Nations 2030 agenda for sustainable development pledges to leave no one behind. Unfortunately, too many people in Ireland are still being left behind. The survey on income and living conditions published last week showed that households with people not at work due to illness or disability are particularly vulnerable to poverty and social exclusion.

Almost seven years have passed since the mobility allowance was discontinued and we are still awaiting a new scheme. Progress in expanding personal assistance has been far too slow with the number of hours provided to people with disability considerably short of what is needed. The number of children, whose assessments under the Disability Act 2005 are overdue, has increased by 15% this year. Thousands of children are waiting far too long for essential therapy services and assessments.

The Government has ignored repeated warnings about a funding crisis in the disability sector. The independent review group established to examine the role of voluntary organisations in health and social services found that two thirds of disability services are provided by the voluntary sector. They are enduring a funding crisis and there is concern about the viability of many of these organisations.

Waiting lists for assessments and intervention have been allowed to spiral out of control under Fine Gael and there are serious issues with staffing and access to residential care. This combination is resulting in families waiting months and in some cases years for help.

People not at work due to illness or disability are particularly vulnerable to poverty and social exclusion. The latest data demonstrate that there is no recovery for many people not at work due to an illness or a disability. People with disabilities are not feeling the effects of economic recovery, and have poverty and deprivation rates significantly above the national average. It is imperative that the Government gets to grips with this issue and addresses why the at-risk-of-poverty rate for this group remains stubbornly high and is going in the wrong direction.

The situation is further compounded by the Minister of State's insistence on pointing to the disabled drivers and passengers scheme as a viable alternative and workable support for those with mobility issues. The reality is starkly different. The Minister of State is fully aware that the Ombudsman has raised serious concerns about the equity of this scheme. People with serious disabilities are being told they do not qualify for the scheme due to the stricter criteria. Furthermore, the Minister for Finance has confirmed that he has no intention of changing the criteria for the scheme despite the Ombudsman having raised this red flag with him. I have grave concerns about this and the Minister of State needs to address them.

I ask for the Minister of State's assistance in the case of a young girl from Carlow who was left paralysed from the chest down following a car accident in County Laois last year. She has a severed spinal cord and she will never walk again. Two year old Amira Anne O'Toole Rough is currently in Temple Street Hospital. Her mother, Caroline, contacted me this week as she is at her wits' end over her daughter's care.

Her medical team and her mother differ on the child's treatment and now she feels that her daughter. having been fitted with a tracheal tube against her family's wishes. is trapped without adequate provision for rehabilitation or the possibility of a home care package in her native Carlow because of this intervention.

Amira could attend rehabilitation in the UK but because she has an older sibling he cannot be left at home. Ultimately, Amira's mother, who herself is suffering from post-traumatic stress from the accident, would like her daughter to receive rehabilitation in Ireland.

Currently Amira's family is seeking legislation for children with severe needs such as Amira for the right to have rehabilitation care in Ireland

Acting Chairman (Senator John O'Mahony)

The Senator should not really be naming somebody.

Senator Jennifer Murnane O'Connor

No bother. I asked for and got permission from the mother. There are no supports for children with a tracheal tube in Ireland. The local community has, as usual, been faultless with its support but these families should not have to do this. Nobody should be in such circumstances where they need to be fighting for this.

Access to rehabilitation can offer the best chance of recovery for someone like Amira to live the best quality of life which maximises her full potential and ability. To force her to travel to the UK for treatment at such a young age is wrong. There is an appalling lack of rehabilitation services in this country for those who have suffered life-changing injuries, for those who have had brain injuries and for those suffering from mental health issues requiring rehabilitation through no fault of their own.

We have got to look at this. There was a plan in Sláintecare to look at this very issue and I hope my message today will be heard loud and clear that we have to examine funding for rehabilitation so those with acquired disabilities will reach a full life. It worries me that the mother in this case has made several attempts to meet with the HSE and it has refused her. I would like the Minister of State to set up that meeting. That is unfair on the child's mother and the family.

I also want to ask the Minister of State about another issue. I addressed this in the Seanad last week when the Minister of State, Deputy Catherine Byrne, attended. I contacted the Minister of State, Deputy Finian McGrath, as I know did the Minister of State, Deputy Byrne, about confirmation of the €62,000 for Holy Angels in Carlow to keep the centre going. There has also been a new plan for a school and I want to know the update on that plan. The HSE has made land available at Kelvin Grove for the new centre.

Acting Chairman (Senator John O'Mahony)

That is not really relevant to the debate we are having.

Senator Jennifer Murnane O'Connor

It is about disability.

Acting Chairman (Senator John O'Mahony)

Perhaps it is something that the Senator could talk to the Minister of State about afterwards.

Senator Jennifer Murnane O'Connor

I could not get him last week so I have to take the opportunity now when he is here.

Acting Chairman (Senator John O'Mahony)

It is not appropriate. The Senator can engage with him on that issue afterwards.

Senator Martin Conway

The Senator should put down a Commencement matter.

Senator Jennifer Murnane O'Connor

The problem is-----

Acting Chairman (Senator John O'Mahony)

Senator Conway, please stay out of this.

Senator Martin Conway

I am just trying to be helpful.

Acting Chairman (Senator John O'Mahony)

Can Senator Murnane-O'Connor please address that issue with the Minister of State privately afterwards? It is not relevant to this debate.

Senator Jennifer Murnane O'Connor

I have. The Minister of State has always been courteous. However, we need to look at Commencement matters because the Ministers we are looking for at the time through no fault of their own are never able to attend. That is the biggest issue. If we could get the Ministers we require to be here when we put in the Commencement matter, we would not be bringing up issues that we need to see the Minister for. That is something the Cathaoirleach needs to address. I thank the Minister of State for being here today. That €62,000 is vital for Holy Angels. I wrote to the Minister of State about it and I will meet with him when this is over.

Senator Ivana Bacik

I welcome the Minister of State. It is welcome this week that we are marking International Day of Persons with Disabilities, which was yesterday. It is a United Nations day aimed at promoting the rights and well-being of people with disabilities in all spheres of society and development, and increasing awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life. It is worth remembering the purpose of the day when we are reflecting on the current state of society for persons with disabilities here in Ireland. I have listened to the other contributions and acknowledge the work done on this issue by our colleagues, particularly Senator Dolan, whom Senator Ruane rightly commended for his unstinting work in highlighting issues for persons with disabilities and inclusion and equality since the start of his time in this Seanad in 2016. I also acknowledge Senator Conway, who has really been to the fore on this issue for Fine Gael.

As Senator Conway says, undoubtedly we should acknowledge the immense progress that has been made on advancing the rights of persons with disabilities in recent years. In schooling and education we now have much greater resourcing and recognition of the need to ensure supports for children with additional needs and to ensure accommodation for persons with disabilities in education. That is fairly well established. We also have increased awareness about inclusion, which is part of the United Nations aim, through initiatives like those which others have mentioned, the exhibition that was launched yesterday, Someone Like Me at City Hall, and the Purple Lights campaign that has been promoted by the Disability Federation of Ireland. The Labour Party website went purple yesterday to mark the Purple Lights campaign. These are all important initiatives to enhance and increase visibility. I am a member of the Oireachtas Joint Committee on Foreign Affairs and Trade and we have pushed to ensure that there is inclusion of disability and disability-proofing in our international development programmes. I commend Irish Aid and the Government's work on that issue. That is all positive.

I note that the Minister of State has also referred to highlights and milestones that the Government has reached. However, it has to be said that there is still a significant gap in achievement and some really serious issues are being raised. The Minister of State mentioned the issue of employment of persons with disabilities. He cited the figures from census 2016 that only 22.3% of the total disabled working population is in work. It is a stark figure. People with disabilities are still only half as likely to be in employment as others of working age. Clearly that is a major concern, particularly when the theme of yesterday's United Nations day was promoting the participation of persons with disabilities and their leadership, taking action on the 2030 development agenda. A key component of that must be the support and promotion of workplace opportunities for persons with disabilities and clearly that is somewhere we are falling down. I ask the Minister of State to address this in the work that is being done on the national strategy, which is most important. Senator Conway has also rightly highlighted it.

Another glaring issue that has been raised in this House on a number of occasions, even just in recent weeks, is the issue of funding for disability groups, NGOs and those who are providing essential services and supports. We had a debate in this House on the Save Cuisle campaign, which was raised by colleagues on all sides of the House. It is very worrying to see the closure of a crucial respite centre in the west. Just yesterday we saw the launch of the Disability Action Coalition, which seeks to highlight how rising insurance costs threaten the future survival of disability organisations. That is a particular issue and I would like the Minister of State to address it in his response. I was shocked to see the figures. Enable Ireland says its insurance premium this year alone rose by €100,000. We know the impact of rising premiums on small businesses. We have had debates on that and are well aware of it. This is a really particular issue for disability organisations. When budget 2020 was announced in October, the Disability Federation of Ireland highlighted the more general issue of the lack of funding for disability groups and indeed referred to persons with disabilities as the forgotten vulnerable, given that the budget, as they said, will not alleviate the fact that the number of those with disabilities who are in poverty has increased. These are really serious problems that need to be addressed.

Senator Ruane referred to the impending closure, announced yesterday, of the National Platform of Self Advocates. We are seeing signs of organisations closing. We all received an email about that. I am not sure if the Minister of State received the same email. These are worrying developments at a time when there should be funding available for these groups and organisations. It links closely with the promotion of opportunities in the workplace and in employment for persons with disabilities. It is crucial that we see organisations that are adequately funded that can provide the necessary supports. I had the pleasure and privilege of being invited to speak recently with a group of young people with Down's syndrome as part of Down Syndrome Ireland training and to hear from them about their experiences in the workplace, the difficulty some of them have experienced in getting work but also about the enormous pleasure and satisfaction and indeed the importance of receiving a pay package that comes with being employed. As others have said, there are some really notable employers that are doing a lot across the country to ensure opportunities for those with disabilities and that have really strong positive action programmes. There are private sector organisations delivering but we need to ensure that organisations like Down Syndrome Ireland which provide the necessary training and supports for young people and all those with disabilities seeking to enter the workplace are adequately funded so they can continue to provide training programmes.

I refer also to the welcome ratification by Ireland last year of the UN Convention on the Rights of Persons with Disabilities. The Minister of State referred to it. I commend the ratification but I also wish to ask when we will be in a position to ratify the optional protocol, which I understand has not yet been ratified and which would enable individuals to make complaints against Ireland at the UN Committee on the Rights of Persons with Disabilities. That is an important part of the international legal framework for recognition and acknowledgement of the rights of persons with disabilities. It is unfortunate that we have not yet been in a position to ratify it. Last year the Minister of State told the Oireachtas Joint Committee on Justice and Equality that he hoped to ratify as soon as possible but at the latest in two or three years' time. That is clearly beyond any projected lifetime of this Government.

Following last night's vote in the Dáil, the lifetime of this Government is looking increasingly short. Nobody is putting it at any longer than five or six months from now. It is a worry that we will not see ratification of the optional protocol in the lifetime of this Government, unless the Minister of State can enlighten us further on it. It is important when marking International Day of Persons with Disabilities that we note the importance of ensuring there are transnational frameworks in place through which people who are still suffering discrimination and exclusion and who are not getting the equal opportunities that others get have a mechanism for making complaints under the convention.

Senator Gabrielle McFadden

I welcome the Minister of State and his officials. He is always willing to come to the House when he is invited. I will not repeat everything that has been said. It is fitting to have this debate and hear the contributions of Members, given that the International Day of Persons with Disabilities is this week.

The Minister of State referred to the NSID, which we all welcome. There is no question that we all want the best opportunities for people with disabilities. As Senator Bacik said, we welcome the fact that the Government ratified the UNCRPD. We spoke on it and supported it on numerous occasions, and I commend Senators John Dolan and Martin Conway on their contributions. I also welcome the €2 million the Minister of State mentioned for the autism plan. I do not know if it is enough and I would love to hear his opinion on that. Senator Reilly introduced a Private Members' Bill in the House dealing with autism. Is that included in the plan for the €2 million in 2020?

I commend the Government on having a Minister of State with responsibility for disabilities at the Cabinet table. It is very important. I commend the Minister of State on many measures but despite all the measures that I consider to be positive, I am concerned about one matter all the time, which I have mentioned to him previously. I do not like using the particular phrase but it has been quoted to me so I will use it. Services for people with disabilities are considered to be low hanging fruit, and when money has to be cut, it is cut from disability services. I am being parochial in referring to CHO 8, but it is my local CHO and it covers counties Laois, Offaly, Longford, Westmeath and part of Meath. Life plans are drawn up for people with disabilities, be they intellectual or physical disabilities, and people who need a personal assistant. The occupational therapist, psychologist or whomever draws up business plans and presents them to the HSE for funding so people can live in their homes and communities, where they want to live, and should live. These business plans take time to complete. People have to be assessed and it all costs money. The business plans are written and submitted to the HSE, but they are either unanswered or the answer is "No". There is something wrong. We must examine how these budgets are spent, and the Minister of State can do this.

I am dealing with a case involving a gentleman who has mild intellectual disability and a physical disability. He is starting to struggle and his family is struggling to look after him at home. He needs residential care. We do not want people in residential care and prefer to move them into the community, but there are situations where they need residential care. It should be in small settings that are suitable for them, not vast settings that are unsuitable. This gentleman needs that and I am aware of a service that likely could help with this. If there was a little jigging about with a budget, this service could provide a service for this gentleman and a couple of others. It requires an open mind about budgets and how they are divvied out.

Senator Martin Conway

Flexibility.

Senator Gabrielle McFadden

Yes, a little flexibility. This is something we must examine. Staff in the HSE have been very helpful to me and are trying to support me to get the result I seek, but this is something we should examine overall to ensure there is flexibility in budgets. If a little tweaking was done, the service I know could provide services for others as well. It is a domino effect where one moves a person into one house and one moves somebody else out to facilitate him. All of that could be done if there was flexibility. Perhaps the Minister of State will examine that.

I commend him on his work. It comes from his heart and I respect him for that. However, we must examine the budgets, how they are spent and the flexibility thereafter.

Minister of State at the Department of Health (Deputy Finian McGrath)

I thank Senators for their contributions. They have a genuine interest and regularly attend these debates. I always make it my business to come to the House to deal with this issue. Plenty of people have different issues and problems, but that is my job and I have no problem with that. I thank all Members for their genuine interest and for advancing the position of people with disabilities in society. That is very relevant and we see that today.

In addition to the various matters I mentioned earlier, Senators will be interested in the progress on meeting the terms of the CRPD. My approach and that of the Government is one of sustained and ongoing improvement. Work is continuing on the reforms needed for optimum compliance with the Government's requirements. As an Independent Alliance member of the Government, I particularly thank Senators Conway and McFadden for their support on the UN convention. I would not have got it through the Cabinet without that support. I thank them because that was essential. However, it is only the start as far as I am concerned.

I will go through the issues and then return to matters concerning individuals. First, we will consider ratifying the optional protocol once we have completed the full reporting cycle on the UNCRPD. It is important to have a full picture of our obligations before we consider ratifying the protocol. I accept the Senator's point that we need to do that.

The funding for the national platform is a valid issue to raise. I know the people involved well. I work with them and I have given them interim funding for the past three years. Many organisations look for funding. Work has been undertaken on a model to involve people with disabilities in policy development, in line with the UNCRPD obligations, and these proposals will be finalised early next year.

With regard to Irish Sign Language, additional funding has been provided for the sign language services and work is well advanced to prepare for the commencement of the Irish Sign Language legislation.

The UNCRPD imposed a series of obligations on Ireland, and Departments are working collaboratively to plan for their implementation. I am working within the framework of the national disability strategy to implement them.

Funding is another issue. Funding from the Dormant Accounts Fund has been secured for the initiative to engage with employers on the employment of people with disabilities. It will provide seed funding for long-term initiatives in this area.

The insurance issue was raised by a number of Senators. The Government is concerned about the negative impact of insurance costs. It has established a cost of insurance group to examine this matter. From my point of view, we are working on the HSE service plan for 2020 and the service providers will raise those issues, and have raised them, in respect of their funding. There is also an issue with deficits. I have set up a group to examine that.

Cuisle was raised again. I want to ensure that people with disability have greater choice. I want to move away from providing respite in congregated health service settings to integrated holiday settings and to provide people with more options, as long as that supports the need to maintain the service. It is not correct to say that I sat on the pot or was like Pontius Pilate on this issue. I have been involved with it and I reject the comments made by Senator Leyden.

Senator Martin Conway

Hear, hear.

Deputy Finian McGrath

I have engaged with the IWA and the HSE. I raised the concerns the Senator raised in the House last week with regard to staff, the way they were treated, funding and so forth. That is ongoing.

What I am saying to colleagues is that I am in favour of choice and respite services. I spent yesterday meeting disabled people who use Cuisle and I made a point of listening to what they were saying to me. I have made my views well known. I cannot intervene in the day-to-day running of a section 39 organisation but I can make my views known, in addition to the views the Senators' reflected to me and those on other issues.

The Irish Wheelchair Association is saying most of its people want the hotel model. That is their choice. I am always available to meet the association and the HSE. Should the association wish to discuss any future proposal with me, my door will never be closed. I listen to people and to common-sense advice but I will not take any lectures from Senators such as Senator Leyden, who are saying I closed down Cuisle. I did not.

Senator Martin Conway

Correct.

Deputy Finian McGrath

The board of the Irish Wheelchair Association made a decision. Incidentally, one third of the board is made up of people with physical disabilities. That decision was the board's choice. While I had nothing to do with the situation, I am always open to working with people to resolve conflict.

With regard to the assessment of need, it is absolutely correct to state there is an issue. I take that on board. The up-to-date position on the recruitment process to deal with the delays is that, in last year’s budget, we got the go-ahead for 100 new speech and language therapists and occupational therapists to try to reduce the waiting list. The bad news is that it has taken us a long time. We have recruited only 63. The good news is that the other 37 will be in place by the end of this month. I hope that will make a difference. We had a problem. There are to be additional therapy posts, ranging from speech and language therapists, occupational therapists and physiotherapists to social workers and psychologists.

I am conscious that timely access to assessment services is imperative in a child's development. I take the point in this regard and I understand how delays in accessing services are a source of great concern to all Senators. I am confident, however, that the 100 therapists will be in place. We need to keep this rolling. There also were internal trade union matters associated with the assessment of need.

I mentioned Cuisle and note that Senator Devine talked about the Oireachtas group and I agree with her. I have dealt with the optional protocol. The Senator made a very relevant point on the resourcing issue. I want to be able to draw on the UN convention — Senator Conway mentioned this — as an international convention. The real point, however, is that made by Senator Devine, which is about making rights real for people. That is essential and what we need to achieve. We need to ensure follow-up. That is my job at the Cabinet table. I have to make that a top priority, and I will do that.

I agree on congregated settings. As far as I am concerned, I want as many people out of them as possible. So far this year, we managed to get 132 out. I would like to do more. The same goes for the nursing homes situation. It is unacceptable to have young people, particularly those with disabilities, living with patients with dementia, Alzheimer’s disease and so on. There is no debate about that.

Senator Ruane mentioned the poverty issue. It is important. I dealt with the protocol issue. We have brought the Disability (Miscellaneous Provisions) Bill as far as Committee Stage. It is stuck there and we are trying to resolve the impasse. I have the Bill ready to roll. A couple of colleagues have issues but I hope there will be movement on this in a matter of weeks. The Senator is correct that it is unacceptable to have high rates of poverty among those with disabilities. I am trying to tackle that. Senator Conway touched on the idea that the best way to deal with the problem is to realise there are many people with disabilities who have many abilities and to get them a job. They will not lose their medical card, as is being suggested.

Senator Conway said that, when he was going to school, there were no special needs assistants and that there are now well over 10,000. When my daughter, who has a disability, started primary school 25 years ago, there was no such thing as a special needs assistant. She was the only child with Down's syndrome in the mainstream class in Killester girls' national school. There were fantastic staff there; it is a very inclusive school but it had absolutely no resource hours or special needs assistants. While circumstances have improved, we need to move on this.

Senator Conway mentioned having a Minister of State at the Cabinet. This is important because Governments have many priorities and one has to remind colleagues constantly that it is not just the Minister of State responsible for disabilities who has a role, because every single person around the table has responsibility with regard to disability.

Senator Murnane O'Connor mentioned transport in Carlow the last time I was here. I am working on that and have been on to the various transport officials about it.

Senator Jennifer Murnane O'Connor

I thank the Minister of State.

Deputy Finian McGrath

Part of the remit of those associated with the national disability inclusion strategy concerns transport. This fits in with what Senator Conway is saying, namely, that the UN convention is not just aspirational and that we need to give it teeth and make it deliver. Having a special debate here at some time on employment for people with disabilities would help me. Having such a debate in the Seanad Chamber would give us another push. There is a lot going on at present and there are examples of good practice. Nearly 7,000 people with some form of disability are working across all the county and city councils and public services. That is a step in the right direction. There is a target of 6%. It used to be 3%. Some educational institutes and some places of employment have gone over the 6% target in examples of good practice. We do not acknowledge that and it is important to mention it. I strongly support the call for a debate. I wish the Senator the best of luck in having it here.

With regard to Senator Murnane O'Connor’s point, I mentioned the assessment of need. I will talk to her about the Carlow case and Holy Angels day care centre.

Senator Jennifer Murnane O'Connor

I thank the Minister of State.

Deputy Finian McGrath

With regard to the mobility scheme, I should not say it but there are two Bills. I have mine and the Department of Public Expenditure and Reform has its one. There is a bit of a debate on the mobility aspect. The Senator is right that we need to get on with it. Behind the scenes, I am pushing the view that the scheme is too narrow. There is no debate about that. We all know there is a bit of a blockage.

Senator Bacik referred to employment, which is important, and to insurance costs. I have mentioned insurance. The social care plan negotiations are still taking place. That is something we have to deal with.

I have also mentioned the national platform. We have given the National Platform of Self Advocates a few bob as part of an interim agreement but, as I stated, we need to secure stable funding for it. I have been working with the organisation for the past two years. It is a fantastic organisation. I have given it some interim funding to keep the show on the road. What I really love about the organisation is that people with disabilities are running it and speaking up for themselves. Guess what, that is in line with the UN convention. That is something. The Department of Justice and Equality is examining all these issues.

I commend Senator McFadden on her comment. She also mentioned the autism plan and the figure of €2 million. It is not enough because we will always be looking for more. It is a start, however. The Senator's point about low-hanging fruit is highly relevant if people feel as described but I try to fight the funding battle regularly. The funding we are planning for 2020, of more than €2 billion for services, will represent an increase of 7% if we get it over the line. There is no other Department that got a budget like that this year in the context of the no-deal Brexit budget. I have to make sure what the Senator described is not the case.

The Senator also referred to CHO area 8 and the need to be open-minded and flexible about budgets. These are sensible proposals. I will deal with those when dealing with the social care plan. When the Senator talks about residential settings, she is talking about the 132 individuals we took out of such settings year. They are gone to small four-bedroom units with support staff in them. They all have their own room and television, and they have their meals when they want. These are the kinds of residential places we are talking about now. The young man mentioned is included.

We are having the debate on personal assistant hours this year. I accept that many people who are pushing the physical disability issue saw a lot of the money going towards the intellectual disability sector. Some of them were accusing me of bias in regard to that issue. I push for funding for emergency residential places. Some of the packages can cost between €100,000 and €200,000 per person per year. The cases are extreme, however. The adults are very high dependency and are very disruptive, and they have to have the care in question.

When one sees those cases on one's desk, one puts them for priority and sadly, other disabilities do not get to the top of the queue. The two issues that I am pushing in the service plan negotiations on which I had a significant debate are personal assistant hours and emergency residential places because we need to assist those families that are in a bad situation. Senator McFadden named one and Senator Murnane O'Connor named another. We must pick those issues. There are difficult decisions to be made when one is dealing with a disability issue, and one sees very sad cases. I assure Senators that I listen as much as possible and I am interested in the person with a disability and what his or her needs are.

In addition to this work, Senators will also be aware that there are a number of legislative developments to support the implementation of the convention. The Assisted Decision-Making (Capacity) Act 2015 is one such reform. Indeed, in 2015, the Act was framed to specifically meet Ireland's obligations under the convention. It is significant reforming human rights legislation. I say this for three reasons. First, it emphasised the personal will and preferences. Second, it ensures respect for the rights of persons. Third, it supports the person achieving greater autonomy. Crucially, the Act was designed to meet the needs of people who have age-related conditions; people with disabilities; people who have acquired brain injuries; and people with mental health issues.

The Act conferred on the Mental Health Commission the substantial important function of establishing the decision support service. This service will play a crucial role in vindicating human rights and assuring those who require a service a focus on their needs. It is estimated that the number of adults in Ireland who require the level of support to make decisions is 220,000. No doubt, this figure will only increase in the coming years given our population increase. There will always be other people involved. Decision-making supporters, for example, are people who would be notified of a decision-making support arrangement to be registered with the decision support service. As a Government, we are providing the necessary supports for this. The 2019 Revised Estimates include an allocation of €3.5 million in the Justice and Equality Vote for the services while €3 million was provided last year.

Essentially, we need to ensure that disability is brought into the mainstream. We have a long way to go - I accept the arguments made in the debate - but we have started. We also need to ensure that the necessary administrative process and support measures are put in place and we are committed to doing that before the substantial provisions of any Acts are brought into operation.

I thank Senators for their contributions and for their interest in the disability issue. If there are any particular one-on-one issues where they want me to meet families or have a word with the HSE about particular matters, my door is always open.

Senator Martin Conway

I thank the Minister of State. As always, he had a comprehensive response to our point. I thank his officials as well.

Sitting suspended at 2.03 p.m. and resumed at 2.24 p.m.